Genetic Testing

PahillPahill Member Posts: 40
edited May 2018 in General discussion
Hi everyone not sure if there was already a group about gentic Testing so sorry if there is one.  I am looking to get the genetic test done to see if I carry the gene. Just waiting for the paperwork to come. If anyone has had it done could you please tell me a little bit about it..Do they test for all sorts of cancers or just one...Hope its ok to start a new group. Sending hugs to you all.
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  • lrb_03lrb_03 Member Posts: 1,126
    edited May 2018
    You can start a new conversation any time, @Pahill. I  have a referral in to see someone at present. I think first you talk to a genetic counsellor, and they take a really comprehensive history of cancers on both sides of your family, starting with immediate family and working out. From there they can work  out risks, and whether you're eligible for any government funded testing, such as BRCA 1& 2, or not, and where to go from there. @primek, @melclarity, or many others will be able to help more, I'm sure
  • GlemmisGlemmis Member Posts: 300
    Hi @Pahill, before I started chemotherapy my oncologist suggested I might like to get tested for BRCA1 & 2 & said I could have it done there & then with a blood test & no charge so I did. She gave me the results 6 weeks later which were negative. I suspect if they were positive then I would have been offered counselling. 
  • JoeyLizJoeyLiz Member Posts: 309
    Hi @Pahill I had the genetics test due to my young age. They send you out a questionnaire about your family history which you fill in and send back (basically who had cancer which type what age etc). Then I saw a lovely genetic counselor in the city who went back over the history and and worries I had and a bit about the testing they do. Mainly it’s BRCA1 BRCA2 PALB2 TP53 and ATM. They do a blood sample and send it away takes about 12wks if it’s not urgent. I was negative but they still asked if I wanted to discuss findings with a professor from Peter Mac in Melbourne who comes to Hobart every so often. I did that and he too was lovely. I enrolled in a research study which means that they keep testing my blood if they find anything new and let me know. Hope that helps x
  • melclaritymelclarity Member Posts: 3,358
    Hi @Pahill I had to go specifically to Familial Cancer Clinic at the Royal Melbourne Hospital, I'm surprised @Glemmis you got it done with the Oncologist? I've never heard of that before? I know it was a series of questions to fill in and then you have a meeting with the Geneticist. They take a blood sample and send it away. Its really super easy no big deal at all. I'm sure they just check for BRCA Gene or for more money there may be other mutations they can I can't remember, but it definitely wasnt a general cancer screen. x
  • GlemmisGlemmis Member Posts: 300
    Hi @melclarity, my first app with her was at a major public hospital before I had my chemo in the private system. She offered the test & I literally just walked down the hall & filled in a form & then had the blood taken & it was free. I had a young cousin who died of BC 30 years ago & I think she became alarmed when I told her!
  • primekprimek Broken HillMember Posts: 5,076
    I was referred to a genetic specialist and had to fill in an extensive history of siblings, parents and their history. It took some time as I am 1 of 10. My Dad was 1 of 9....and many many people gene positive. The idea of the pre counselling is discussing risks beforehand... otherwise getting the result is like being hit with a cancer diagnosis. My family had a known positive gene...but they were in Scotland so the team were able to contact them beforehand so they knew where on the gene it was faulty. By doing the tree also means as further positive people turn up we have a clearer picture if it is a genetic bc.
    I believe they often do offer very young tnbc ladies testing. The thing is ...it is more tban just brac1 and 2 that cause bc. It can be from at least another 3 other gene mutations. That's why best handled by the experts. They also connect  you with appropriate people if needed if positive. Like a onco-gynacologist. I had already made the decision for further surgery if I was positive. However as I wasn't, it wasn't necessary. Some faulty genes only cause bc but not ovarian...which is helpful information to know.  My siblings with yhe same father were all tested to see if we carried the faulty Scottish gene. Fortunately none of us did...which was a huge relief. 
  • melclaritymelclarity Member Posts: 3,358
    @Glemmis oh Wow! honestly have never heard of it being so easily accessible. Gee I had to get a referral and then was out of pocket nearly $1,000. Crazy!!! especially when I had my Mum who had BC and I had it twice??!!! but I still had to pay!! :/
  • kmakmkmakm MelbourneMember Posts: 7,442
    @melclarity It's a draconian points system  :#
  • JoeyLizJoeyLiz Member Posts: 309
    edited May 2018


    @melclarity They now offer it free to any breast cancer patient under 35 years 
  • kmakmkmakm MelbourneMember Posts: 7,442
    @JoeyLiz I don't know what it's called!
  • melclaritymelclarity Member Posts: 3,358
    Hmmm yes its pretty brutal?! I'm glad its free to under 35, so it should be, but really with a 1st degree relative and then having had a recurrence surely thats enough grrrr. Main thing it was negative, but still I was furious to have to pay!!!
  • JoeyLizJoeyLiz Member Posts: 309
    @melclarity yes it should be free to anybody diagnosed!

    @kmakm haha I had to look up draconian and yes brutal! It’s the Manchester score, if you score 18 I think it’s free, I scored 17 (If I was diagnosed at 30 - 3 months earlier - I would have scored 18) but luckily they changed the law the month before I was tested so I got it for free
  • GlemmisGlemmis Member Posts: 300
    I don't know why it was free for me as I was 56 but glad I had it done as I have a daughter. 
  • kmakmkmakm MelbourneMember Posts: 7,442
    Hi Pahill. My mother had breast cancer at my age (51) and survived, my sister was diagnosed at 44 and didn't survive. I don't know if she paid for it or not, but my sister had genetic testing done three years before my diagnosis. It was negative for the tested genes (three, out of a possible nine I think). Since then, no new tests have been developed so there was no point in my doing it.

    My breast surgeon sent my details to the Peter MacCallum Familial Cancer Centre and free of charge, I had a long phone conversation with the genetic counsellor. She then sent me a four page report. She'd had a look at my sister's results and the information she sent me was detailed and particular. It included amongst other things risk management information, advice about the pill & HRT, and risk factors for me, my remaining sister, and my daughter and niece.

    For all those thinking about getting the information in reference to their relations, the report gives lots of guidance about what you should do. For example, my report said my sister has to have her GP check her breasts every six months and have yearly mammograms. There was information about how she could take Tamoxifen (which she refuses to do) or consider a prophylactic mastectomy, which she is thinking about. My daughter and niece have to start surveillance at 30.

    Attached below is one of paragraphs in my report, which I found fascinating.

    I hope this information has been useful. Good luck with your decision. Let us know what happens! K xox


  • onemargieonemargie queenslandMember Posts: 1,240
    I had the genetic test as I was under 50 and had no family history I was negative but I can’t remember  how many genes they tested for though. Margie.  Xx
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